Needs of people with serious and terminal illnesses ‘risk being sidelined’

Understandable reluctance among many people with serious or terminal illnesses to plan ahead may mean their needs and wishes are being unfairly sidelined. Their unwillingness to associate publicly with their illness by joining self-help and support groups may also contribute to making their views ‘invisible’ to service planners, according to research funded by the Joseph Rowntree Foundation.

The study, by researchers at Bradford University and Bradford Hospitals NHS Trust, suggests that conventional approaches to user involvement when planning care services are often inappropriate for seriously-ill people who are ‘taking each day at a time’. But it insists that imaginative thinking, including use of home visiting and computer networking, could ensure that their care needs are properly recognised and met.

The research included a series of in depth interviews with people with three chronic progressive illnesses: cystic fibrosis, multiple sclerosis and motor neurone disease. Carers were also interviewed, as were specialist workers and members of voluntary and self-help groups. The study found that:

• People with serious and terminal illnesses tended to take ‘each day at a time’ and were reluctant to anticipate or talk about their possible future needs.
• People who were seriously ill often lived outside conventional social and community groups. They either chose to cut themselves off or they felt excluded by those around them.
• Others said they wanted to lead a ‘normal lifestyle’ for as long as possible, and did not want to join national or local groups concerned with their illness.
• Seriously-ill people and their carers often had conflicting needs for information and support. Carers tended to be keener on meeting others for information and finding out more about a disease. This placed specialist organisations at risk of being dominated by the views of carers rather than those with the illness.
• As with all self-help and support groups, specialist organisations faced difficulties getting people involved. The researchers conclude that these organisations must work hard across the whole spectrum of need if they aim to be representative when ‘speaking for’ people with certain illnesses.
• There was a wide range of experiences with health and social care agencies. Where experiences had been bad, for example in the way a diagnosis had been given, it was hard to rebuild confidence.
• Service planning and policy-making based on needs assessment across whole populations may place people with less common illnesses at a disadvantage. ‘Invisibility’ within the community increases the danger that the needs and views of those who are most ill will go unrecognised.

Neil Small, co-author of the study, said: “Reluctance by people who are seriously ill to talk about future needs should be respected. People should not be pressured into being involved. Those who are seriously ill or approaching the end of their lives will often have more pressing concerns than taking part in conventional ‘user involvement’ activities. But these people do have views and experiences that, if listened to and acted upon, could improve care for themselves and those in similar situations. We are clear that the practical, emotional and conceptual barriers to involvement identified in our study should act as a spur to imaginative thinking about the way forward rather than an excuse for inaction.”